Evan's Story: From Trauma To Acceptance

*Trigger warning: mentions of PTSD, panic, psychological distress, psychosis, and existential thought patterns.

Depersonalization is an “as if” condition. You feel “as if” things are true, but you know they are not. I feel as if I am not a part of the world around me, I feel as if a part of me has died and yet I live on, I feel as if I don't exist. But I know none of this is true.

My name is Evan and I have had symptoms of DPDR for 21 years. I have had DPDR for so long that I no longer remember what I felt like before my DPDR. I just know how I feel everyday. One upside to having DPDR for so long is no one in my life remembers the old “Evan” either. No one can point out how I used to be and say I have changed, they just know me as me, and my DPDR has been a part of me that whole time. This has helped a lot with my acceptance of  the condition.

Recently, I received an actual diagnosis of what I have been suffering from for more than half my life. I fit the criteria for both PTSD and Depersonalization Disorder, so they merged them together under the title: PTSD with Dissociative Symptoms.

I have PTSD from a rather severe surgery I had when I was a teenager. I still struggle to talk about the details, but the broad strokes of the story is that I woke up from the surgery earlier than I was supposed to and panicked. The surgery was over, but I was still on a ventilator and even though the ventilator was helping me breathe, I felt like I couldn't breathe. I panicked and while the nurses, doctors and my parents looked on, I suffocated until I lost consciousness.

All through my teenage years and into my twenties I knew something was wrong with my mind, but I couldn't figure out what it was. I knew it wasn't just anxiety and it wasn't just depression. For a while I wondered if I was developing some form of psychosis, but my reality testing was always accurate so I knew I wasn't suffering from delusions. But I was suffering - that I knew. My memory became worse, I felt disconnected from everyone around me and I would suffer from severe existential dread that I could best describe as, “feeling crushed by the insignificance of existence”.

But this is all the language I have learned because of DPDR. At that time, I couldn't really put words to how I felt and I was afraid to talk about it because I would sound like I was losing my mind. I went to therapy on multiple occasions but I wasn't truthful about my situation so none of them led anywhere.

This all changed when in my late 20's when I had to have another surgery.

Looking back I should have realized the affect that first surgery had on me, but constant dissociation numbs the mind so much and my dream-like memory just didn't allow me to fully connect the dots. I knew my first surgery had affected me, but I had not linked it directly to my mental health struggles. That was until I had my second surgery and forced my unprepared mind to face my traumas.

My mind shattered.

After that surgery, everything I had been experiencing was now much, much worse. It went from something that made my life difficult but was somewhat manageable to something that was out of control.

I sought out therapy again and after avoiding directly talking about my condition for a few sessions (something I am sure my fellow DPDR sufferers can related to), I finally explained, deep down, how I really felt.

I told them that I felt like a barrier was around me, cutting me off from those around me, preventing me from feeling the world around me. I felt like there was a fog inside my mind and I had trouble locating my thoughts within it. I explained what happened during my first surgery and how it felt like I had died that day and though I had come back alive, I didn't feel fully alive. I felt as if part of me was dead, but the rest of me had to keep on living anyway.

My therapist explained to me that I had described being under a state of “chronic dissociation”….something that seems so obvious in retrospect, but something I had not considered until that day.

With the phrase “chronic dissociation” I found “depersonalization” and with it I found Unreal Charity and the only two books that had been written about DPDR at that time: Feeling Unreal by Jeffrey Abugel and Daphne Simeon, and Overcoming Depersonalization Disorder: A Mindfulness and Acceptance Guide to Conquering Feelings of Numbness and Unreality by Fugen Neziroglu and Katharine Donnelly. 

I couldn't find a therapist who knew anything about DPDR so these books and Unreal became my only therapy, and my only hope to understand what was happening with my mind. And I needed some answers quickly because it turned out I had to have a third surgery.

That was 5 years ago now and I still suffer from the chronic symptoms of DPDR - but I am doing better than I was. I now have a name for my conditions and an understanding of what happened to me and the affect it had on my mind.

The thing that helped me the most in my journey was my acceptance of my chronic DPDR. This may sound counterintuitive since many sufferers fear that their DPDR will always be present and never go away, but the power of DPDR comes from its need to always be the focus of your mind. It is ever present and ever craving of attention. It feeds on your anxiety until it is all consuming of your mental faculties. The more you fight it, the more you pay attention to it and the more anxiety you feel, the more it grows in strength. Acceptance can help break this cycle.

Because DPDR isn't actually trying to hurt you, it is trying to help you. It is just not very good at showing it.

DPDR is a defence mechanism - it is simply trying to protect the mind. In my case, for the last 21 years its been trying to protect me from my near-death experience. My mind believes the trauma I experienced is too much for it to handle and all my symptoms: brain fog, forgetfulness, detachment, feelings of insignificance and dissociation are all just a shield against what my mind considers to be a much worse trauma. DPDR becomes chronic when the mind learns the value of these symptoms to protect itself and starts using them more and more until every sign of anxiety is met with the same response: escape from the world and escape from oneself.

Accepting DPDR doesn't mean giving up and resigning yourself to having it forever, it is about recognizing that DPDR is trying to help and is not something to fear. It is not the mind being broken and it is not something that can't be repaired. The feelings it creates about the world around you may feel real, but they are not actually reality. It is all just a defense mechanism trying to protect you.

And recovery means finding ways to limit how often your mind uses this defense mechanism to protect itself.

It's been 21 years and I have not found a way to turn off the defense mechanism of DPDR but I have at least turned it down to a (usually) manageable level again.